Table 1.
Demographic description of final sample (n = 54)
| Variable | n | % |
|---|---|---|
| Sex | ||
| Female | 52 | 98.4 |
| Male | 1 | 1.6 |
| Age | ||
| 18–29 years | 4 | 7.5 |
| 30–39 years | 21 | 39.6 |
| 40–49 years | 20 | 37.7 |
| 50–59 years | 7 | 13.2 |
| 60 and above | 1 | 1.9 |
| Relationship Status | ||
| Married | 40 | 75.5 |
| De-facto relationship | 5 | 9.4 |
| Single/Never Married | 4 | 7.5 |
| Separated/Divorced | 3 | 5.7 |
| Widowed | 1 | 1.9 |
| Total number of Children | ||
| 1 | 10 | 18.9 |
| 2 | 24 | 45.3 |
| 3 | 14 | 26.4 |
| 4 or more | 5 | 9.4 |
| Number of undiagnosed children | ||
| 1 | 50 | 94.3 |
| 2 | 1 | 1.9 |
| 3 | 2 | 3.8 |
| Age of oldest undiagnosed child | ||
| 0–5 years | 21 | 39.6 |
| 6–10 years | 15 | 28.3 |
| 11–15 years | 8 | 15.1 |
| 16–20 years | 5 | 9.4 |
| 21 years and above | 4 | 7.5 |
| Order of birth for oldest undiagnosed child | ||
| Oldest | 23 | 43.4 |
| Middle | 7 | 13.2 |
| Youngest | 23 | 43.4 |
| Age parents first suspected a medical condition | ||
| Prior to birth | 5 | 10.2 |
| At birth | 16 | 32.7 |
| 0–5 years | 24 | 49.0 |
| 6–10 years | 4 | 8.2 |
| Undiagnosed Condition | ||
| Intellectual and physical symptoms | 45 | 85 |
| Physical symptoms only | 4 | 7.5 |
| Progressive symptoms | 4 | 7.5 |